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Anyone else have Mantle Cell Lymphoma?

Blood Cancers & Disorders | Last Active: Jul 14 6:52am | Replies (89)

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@jujubee

My oncologist report says
"She does not have palpable lymphadenopathy, and the results
of the CT scan of the CAP does not show evidence for lymphadenopathy, or splenomegaly. This is consistent with stage I disease.
Reviewed the implications of mantle cell NHL, and how it can be a very aggressive tumor, and often requires aggressive high dose
chemo/immunotherapy and bone marrow transplant for long term disease control. However, for patients with early stage disease, normal
LDH levels, and no evidence for lymphadenopathy/splenomegaly or bone marrow suppression, observation is an appropriate response, as it
can take several years for the disease to progress.
If she shows progressive lymphocytosis, or develops new lymphadenopathy, will set up a staging PET/CT scan, and consider induction
chemo/immunotherapy, or referral for evaluation of high dose chemotherapy and ABMT. Because of the recent increase in the lymphocyte
count, will repeat a CBC in 3 months.

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Replies to "My oncologist report says "She does not have palpable lymphadenopathy, and the results of the CT..."

Understood. So we were diagnosed by different methods. My post-op lymph node ressection has not been fun. Fives weeks out and it still hasn't completely healed.

Regarding "watch and wait," at Stage 1 it sounds like you have time and that would be an appropriate option. With mine at stage 2 but no spread and appearing indolent, it's been suggested that it could be an option for me as well. I listened to an online seminar where a lymphoma specialist, Dr. Lauren Pinter-Brown, stated that "lymphoma may not and does not have to naturally progress from one stage to another." So I'm really really struggling with whether to begin treatment for my Stage 2 as my oncologist in Bangkok is recommending, or watch and wait as two other lymphoma experts in the US had suggested I might be able to do. It's stressing me out which I realize isn't good for my disease.